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Help needed please

  • By keira21

    Hi. So here goes…my headaches started a year and half ago. They then dissapeard 5 months later and everything was fine saw a neurologist had a mri scan on my head and it was normal.
    So this year in March I started suffering with fuzzy dizzy head everyday all day. I still have it now. But I don’t get many headaches now. My headache pain is always left sided. So now the doctor is blaming all of this feeling in my head on anxiety. I’ve asked her to refer me back to a neurologist she said no and I’ll have to go private. Something I cant afford. This is making me ill. I can’t cope with being fuzzy and headed everyday. But it’s nhs treatment. Do I have the right to be referred again to a nuerolagist? Is there anyone at all out there that has my symptoms. I’m at the end now. Doctors given me indomethacin…propranolol…anti depressants…vertigo tablets…anti epileptic tablets…..nothing is working.
    I just want to feel well again. I’m only 29 and it doesn’t seem like a good quality of life to me.
    Any please? X

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  • By Nancy Harris Bonk Moderator

    Hi keira21,

    Thank you for sharing your story with us – we’re glad you’re here! I am however, sorry you are having such a rough time right now. Not feeling well all the time is debilitating and exhausting, please know you’re not alone!

    The first thing that comes to mind is that it’s time to find a new doctor, one who will listen to you and work with you to figure this out. Telling you it’s anxiety diminishes what you are feeling and frankly is sub-par care in my opinion. Is it possible to see another primary doctor? Being in the U.S. I’m not real familiar with the health system in the U.K.

    I did want to mention it can take up to 90 days to see an improvement in our symptoms when we start new medications. Also during this time potential side effects may lessen as our body adjusts to the medication. I we don’t give each medication a fair trial, we’ll never know which one would have been the one to work.

    Does that make sense?
    Let me know what you think,
    Nancy

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  • By GardensatNight

    Can you see a different doctor to try to get a neurology referral? It completely stinks that sometimes when symptoms are invisible, unlike a broken leg or something, under-educated doctors may try to blame them on “anxiety” or claim they do not exist.

    I had one doctor back in March claim that my weird hearing problems (when I hear music or loud sounds or vibrations, I get dizzy and can feel my brain vibrating in time with the sound) were “psychiatric.” She wrote that in my medical records. Another accused me of making up my severe light sensitivity because the meds she had put me on didn’t fix it. I was very upset. Then, lo and behold, testing revealed low CSF pressure and a different doctor finally ordered an MRI of my spine that showed evidence of intermittent CSF leak which could absolutely be exacerbating my migraine attacks.

    And the problem with a lot of migraine/headache related stuff is often it doesn’t show up on any testing. I’ve had five negative brain MRI’s and 3 negative brain CT’s. I’m kind of lucky in a way that part of my problem did show up on some testing. But it can still be improved by a good neurologist/headache specialist with the right combo of treatments. Have you tried triptans? Botox? Have they talked to you about different triggers like food, light, sound, weather, stress, sleep pattern disruption, etc? I would try a different GP and in the meantime, read up on migraine triggers and see if you can identify any of them for you.

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